I've been thinking a lot lately about what people say to make you feel better when you are going through a tragedy. Many try to say positive things, but sometimes it can come out ohhh so wrong. Now don't get it twisted, I like surrounding myself with positive people, but I also want honesty. I have only a small hand full of people that can do this for me. It can be a whole different story with most other people.
One of the number one things that people say to try to be positive is "You are strong-you will be ok." I don't so much mind the "you are strong" but the "you will be ok" part is just stupid and quite honestly - dismissive. Did you really hear what I just said?! Are you listening to me at all?! There is a reason they call it "terminal" illness - and it is not because you are going to be ok. Sometimes, it is the most surprising when people of my own family say I'm going to be ok. I feel as though they are either in denial or they think I do not know the gravity of my own situation- so they lie. When it is those who are in denial, I feel bad for them and somehow have a need to comfort them. However, when it's people who know damn well what they are saying is a bunch of crap because they think that is what I want to hear- it irritates me. I would rather have honesty. Let me feel what I need to feel and quit trying to say what you think will make me feel better. I would much rather people say "I don't know what to say, and even if I did, it would not make you feel better." Because that is truth. Or something like "I love you, and will be there for you, no matter what" is also good. It is loving, supportive AND honest. Well... that is assuming that person will really be there for you- because some people have made that false as well. I do not need a magic statement to make it all better, because the reality is...there isn't one, and thats ok...
There are also people who speak of the "Law of Attraction." The "Law of Attraction" is supposed to be where you invision the outcome of what you want with positive thinking and it comes to you. And with this "Law" people have told me that I have the power to choose whether I "stay" or "go" - whatever outcome I choose. Really? Is that so? So if I wish hard enough and absolutely, positively believe that gravity does not apply to me, I can jump off the Empire State building? Umm... I don't know about you, but I'm not willing to take that step. Besides, I think it is pretty freaking obvious which outcome I desire. I want to live!!!
Another big thing that I do not particularly want to hear again is "Just have faith that God will heal you." Ahhh... that would be nice, but why would he/she choose me out of everyone. There are children dying everyday of cancer, why didn't God heal them? Is it really because they did not have enough faith? I find that does not sit well with me. The bottom line is - it's much better to be simple and honest. Just give me a hug or let me vent to you without feeling like you need to have to right response - there isn't one!! Sometimes just having the company of someone holding me without words, speaks louder than any other thing in the world.
Sunday, April 17, 2011
Monday, April 11, 2011
A doctor...who?!... Me?!!
Last night I started a new oral chemo. I did not think much of it - given it is something I've done many times over and is hardly "new" chemo. Infact, I've had this very same chemo before. It feels very normal to me to start chemo. I realize that I can not remember life before cancer. I was only 14 yrs old, when I was first diagnosed, and have had it ever since. I've had it throughout all the crucial growing up and finding out who you are stages of life. It reminds me of when a mother says that she can not remember life without her children or remember life before hand. And NO, I'm not comparing kids to cancer, but merely illustrating how life is forever changed and that YOU are forever changed to the point of not remembering what life was like. I don't neccessairly mean this in a negative way. We are meant to constantly grow and change. But I am so used to this way of life, that I can not imagine it any other way.
To most cancer patients, starting a new chemo or treatment of any kind is a big deal. But I have done it all - every possible treatment you can think of. I have gotten to the point where I am the one who designs my own treatment plan. I decide everything and the doctors usually agree with me...actually they always agree with me. I seemed to have aquired enough knowledge over the years to make up my own protocol. There is a strong sense of power and control with being able to do that. Although, when doctors stop giving you direction and recommendations because "there is no right or wrong answer", it is the scariest thing in the world. When a doctor doesn't really know what to do with you , it can be a pretty helpless feeling. But I began to realize that I know my body better than anyone else on this earth. I have ALWAYS been right about what is going on with me. So after the initial panic of having zero input from my doctor, I knew that I was the best doctor for my body anyways. I get to decide the "Western medicine" part of my protocol AND the alternative, "Eastern medicine" part of my protocol. Which, by the way, I would not have the more alternative options available to me if I only had western doctors to tell me what to do. I have the ability to pick and choose what I want and feel I need, for me to heal the best way that I know how.
Doctors do what scientifically has been shown to work- which is great for some, but obviously has not worked for me. Now, I have the choice to do what in my "gut" is the best decision without having to explain away why, I'm doing what I'm doing. I have the ability to be and do what a wish. With a disease that is so chaotic and uncontrollable, I have found my control. I have the control to treat my body and heal it as I please...Ahhh....who needs a doctor? :)
To most cancer patients, starting a new chemo or treatment of any kind is a big deal. But I have done it all - every possible treatment you can think of. I have gotten to the point where I am the one who designs my own treatment plan. I decide everything and the doctors usually agree with me...actually they always agree with me. I seemed to have aquired enough knowledge over the years to make up my own protocol. There is a strong sense of power and control with being able to do that. Although, when doctors stop giving you direction and recommendations because "there is no right or wrong answer", it is the scariest thing in the world. When a doctor doesn't really know what to do with you , it can be a pretty helpless feeling. But I began to realize that I know my body better than anyone else on this earth. I have ALWAYS been right about what is going on with me. So after the initial panic of having zero input from my doctor, I knew that I was the best doctor for my body anyways. I get to decide the "Western medicine" part of my protocol AND the alternative, "Eastern medicine" part of my protocol. Which, by the way, I would not have the more alternative options available to me if I only had western doctors to tell me what to do. I have the ability to pick and choose what I want and feel I need, for me to heal the best way that I know how.
Doctors do what scientifically has been shown to work- which is great for some, but obviously has not worked for me. Now, I have the choice to do what in my "gut" is the best decision without having to explain away why, I'm doing what I'm doing. I have the ability to be and do what a wish. With a disease that is so chaotic and uncontrollable, I have found my control. I have the control to treat my body and heal it as I please...Ahhh....who needs a doctor? :)
Sunday, April 3, 2011
Negative to positive
Do you ever have a bad day,week, or experience and then you see someone who has it way worse than you do? It tends to make you feel better or somehow thankful for what you do have. Well, I'm finding more and more that I'm the person that makes others say "Damn... I guess my life isn't that bad." They say there is ALWAYS someone who has it worse than you do. That may be true, but I have yet to come across it. It is definitely a possibility that someone does have it worse than me, but somehow I do not think it is a probability... That is somewhat sad yet empowering at the same time. It's obvious why it would be sad, but the reason I feel it is empowering is because even though my life is more than a little hard- I am still making it work. I still have laughter and happiness in my life, and when I see people falling apart for much less, it lets me know I do have a sense of power and gives me the feeling of being able to conquer anything. Not that what other people go through is not real, raw emotion as well, I just am merely using the whole "Someone has it worse than you" but in reverse. It may sound like a weird concept, but it somehow gives me strength to know that even though I may have it worse, I continue to pull myself together and live- when others can not for a lot less.
I always try to turn what may first seem like a negative into a positive. Of course, some negatives are much harder to turn then others. I'm still working on trying to turn cancer itself into a positive...so i'll let you know if I find out how. I would not hold my breath on that one though. In any case, I do the best that I can, and especially lately I feel like I've been getting better at it. Which is ironic because the negatives have been seriously coming hard lately- but practice makes perfect:) Quite frankly, I get so emotionally exhausted sometimes, I just have no more room in my mind for anything bad. Which leaves me no choice but to be positive.
People have said to me "God doesn't ever give you more than you can handle." Now first of all, I would NEVER recommend saying this to a cancer patient...or anyone else for that matter. It is a bullshit saying. I handle what I have to because I do not have a choice in the matter. What is the alternative to not handeling it? Dying? If this saying were really true there would be no such thing as suicide. Just saying...because somebody has to. Luckily though, I have been able to handle my situation, but there are many others who have lost their lives to cancer- and I can tell you there is no fairness or reason to it at all. All any of us can do, whether a cancer patient or not, is to make the effort to push through crappy times and find laughter, and happiness but most of all inner peace. Life can be a merry chaos around you, but as long as you find your center and your peace, you have the power to come through to the other side. Negative to a positive:)
I always try to turn what may first seem like a negative into a positive. Of course, some negatives are much harder to turn then others. I'm still working on trying to turn cancer itself into a positive...so i'll let you know if I find out how. I would not hold my breath on that one though. In any case, I do the best that I can, and especially lately I feel like I've been getting better at it. Which is ironic because the negatives have been seriously coming hard lately- but practice makes perfect:) Quite frankly, I get so emotionally exhausted sometimes, I just have no more room in my mind for anything bad. Which leaves me no choice but to be positive.
People have said to me "God doesn't ever give you more than you can handle." Now first of all, I would NEVER recommend saying this to a cancer patient...or anyone else for that matter. It is a bullshit saying. I handle what I have to because I do not have a choice in the matter. What is the alternative to not handeling it? Dying? If this saying were really true there would be no such thing as suicide. Just saying...because somebody has to. Luckily though, I have been able to handle my situation, but there are many others who have lost their lives to cancer- and I can tell you there is no fairness or reason to it at all. All any of us can do, whether a cancer patient or not, is to make the effort to push through crappy times and find laughter, and happiness but most of all inner peace. Life can be a merry chaos around you, but as long as you find your center and your peace, you have the power to come through to the other side. Negative to a positive:)
Simple questions...really?
I recently went on a trip to L.A to visit my best friend Mina. I had a blast! But, I couldn't help but compare myself to others out there. Pretty much everyone is successful in some way, shape, or form- out there it is usually form. EVERYONE I came into contact with either owns their own buisness, or is getting their masters or doctoral degree. Don't get me wrong, it is nice to be surrounded by driven individuals, but me having cancer drastically changes my plans of success. In social situations- how do you say "Well, fighting cancer is my full-time job right now." How do you explain your future plans to new people without going into talking about cancer? I don't know what your experience is with talking about cancer, but for me, it tends to dampen the mood.
In these situations, I usually say I'm a massage therapist because I am nationally certified- but I find people then like to ask "where do you work?" or "how many people do you massage in a day?" And of course because I'm doing radiation everyday I'm not currently working. Awkward. The most simple questions tend to be the hardest, especially if I don't want to get into everything. I can talk about travel, goals, and life in general - very in depth things with new people, but the simple questions are what really gets me.
So needless to say, at first it was very intimidating to come across so many successful and might I add- competitive people all in one place.( L.A) After a while though, I started to realize I am just as successful in my own way. I have been fighting cancer since I was 14 years old. During that, I graduated high school with good grades and on time, then I went to and finished massage school, all while fighting for my life every single day. I have grown exponentially throughout the last 6 1/2years and have an appreciation for life that is unexplainable. I enjoy every moment, instead of constantly looking ahead to what I still need to accomplish. I have already defied the odds with my disease many times. Ummm...yeah, I think I am quite accomplished if I do say so myself:)
However, it did take me awhile to come to this conclusion, and I do still occasionally feel the yearning to know what it would be like to finish college, get a degree and a normal life. OK...maybe I don't want a "normal" life- that would be boring, but you get what I'm saying. Ultimately though, I am proud of myself, and what I've accomplished. It is nice to have this self knowledge and although it will ALWAYS be hard to answer the simple questions, I now have the inner knowing that I am just as good as a buisness owner, pre-med student, or someone getting their final degree.
In these situations, I usually say I'm a massage therapist because I am nationally certified- but I find people then like to ask "where do you work?" or "how many people do you massage in a day?" And of course because I'm doing radiation everyday I'm not currently working. Awkward. The most simple questions tend to be the hardest, especially if I don't want to get into everything. I can talk about travel, goals, and life in general - very in depth things with new people, but the simple questions are what really gets me.
So needless to say, at first it was very intimidating to come across so many successful and might I add- competitive people all in one place.( L.A) After a while though, I started to realize I am just as successful in my own way. I have been fighting cancer since I was 14 years old. During that, I graduated high school with good grades and on time, then I went to and finished massage school, all while fighting for my life every single day. I have grown exponentially throughout the last 6 1/2years and have an appreciation for life that is unexplainable. I enjoy every moment, instead of constantly looking ahead to what I still need to accomplish. I have already defied the odds with my disease many times. Ummm...yeah, I think I am quite accomplished if I do say so myself:)
However, it did take me awhile to come to this conclusion, and I do still occasionally feel the yearning to know what it would be like to finish college, get a degree and a normal life. OK...maybe I don't want a "normal" life- that would be boring, but you get what I'm saying. Ultimately though, I am proud of myself, and what I've accomplished. It is nice to have this self knowledge and although it will ALWAYS be hard to answer the simple questions, I now have the inner knowing that I am just as good as a buisness owner, pre-med student, or someone getting their final degree.
Saturday, March 12, 2011
The beginning
It's hard to put my experiences with cancer into words with order and reason. Because cancer knows neither order nor reason. I had no idea what awaited me when I first heard the words "You have cancer." Actually, the words were more like "Well... we saw something on the x-ray that doesn't look good...but let's not jump to conclusions." What!! What do you mean "Don't jump to conclusions." You said the bad news first doc. And BOOM! You are in a whirlwind of emotions and a completely new, scary way of life- OH...MY....GOD- I have cancer.
When I say cancer is a whole new way of life, I am neither exaggerating nor embellishing. It is like having two full-time jobs. The first job during the day with appointments, radiation, and chemotherapy- and if you are lucky you will make to your second job later at home- that doesn't always happend. However, once you do make it to your second job at home, you are left to cope with your emotions. You think to yourself "What does this mean?", "What will I do with my life?" "How long are these treatments or how long do I have left to live?" It is sooo hard. But I made a decision for myself and said "This will not beat me." Well... it might beat me UP, but it won't break my spirit. Once I made that decision, I wanted to be positive, funny, and take this as the biggest pain in the ass learning experience of my life.
I was first diagnosed when I was just 14 years old. It is an aggresive childhood bone cancer called Ewing's Sarcoma. I know, who the hell ever heard of that? It was my freshman year of high school, as if I didn't have enough problems already. It was kind of brutal being not only a developping, hormonal teenager, but a bald, sick one at that. I missed a lot of school, but the staff seemed to be very accomadating. However, I had friends in my neighborhood where I lived that were not so understanding. A lot of them actually thought I was lying when I told them about my cancer. Ok... yeah I'm lying about some rare bone cancer called Ewing's sarcoma...I mean come on, who does that? Anyways, it's a heartbreaking experience discovering that you did not have the friends you thought, but a necessary one to be able to recognize it in the future, and have a better support team around you.
Now that I am 20, I can see that my "friends" had no idea how to cope. When you are young, you think you are invincible, so for them to except my situation is to except their own mortality. Although all those "friends" were 2-3yrs older than me at the time, my maturity was greater- even before cancer. I did NOT think I was invincible, ironic huh? Now a days, I'm really glad that experience with those people happend, because I really dodged a bullet- almost all of those "friends" got knocked-up or are on drugs. Whew! Thank God for cancer:)
I've had many experiences through cancer over the last 6 1/2yrs that have made me a better individual, and I'm able to understand people with all trageties better too. But believe me, there are times you think "Now what am I supposed to learn from this one!!?" Especially when you are like me with multiple re-occurances, and metastasis ,and have had multiple different protocols/treatment plans AND STILL have cancer. I've had somewhere between 8and 10 different tumors that have all been treated in some way. After the first time I got cancer, I was hopeful, even after the second relapse followed by a stem cell transplant- I was hopeful. It was only when I was almost 2yrs cancer free and in my second semester of college when it came back for the third time in my skull, did my hope waiver. That was the worst day EVER because not only do your chances of survival dwindle when it comes back after transplant, but so does your zest for life. I may never be able to finish college because of this cancer and make something out of myself- or at least that was my thought at the time. Your life can colapse in an instant, but it takes so much time to build it back up. By this point, I had built myself up multiple times already- could I really do this bullshit for a third time?
When most people get diagnosed with cancer they have choices; chemo and surgery or chemo and radiation. They get to pick between a port and a central line. Ok... so maybe all of those choices suck, but I have had everything on that list, including a stem cell transplant and trying out test studies. I have had three or four central lines and one port over the years( a port is under the skin access, while a central line hangs out of the body as access point for chemo) I've had three different reconstructive surgeries; two on my left humerus when the cancer first arrived -I say arrived like it popped in to say"hello" or something.... but the third was on my skull. Yes, my skull. It is considered brain surgery and they took out a huge chunck of the affected part of my skull. I know, I almost crapped my pants when I found out I had to do this. But don't worry they replaced it (part of my skull) with cement- bone cement that is. How comforting... And of course, I've had more chemo and radiation than the entire oncology wing of Children's and Froedert Hospital put together. Ok... maybe thats a little exaggeration, but it is what I feel like. It got to the point that I was jealous of OTHER cancer patients who didn't have to do everthing I did or had shorter treatments, but most of all I was jealous of survivors. Let's just say that when you are jealous of other cancer patients, its time to re-evalute yourself. In all seriousness, of course I love to hear survivor stories and am ecstatic for them because I know how I would feel if I could be cancer free. It would be indescribable...
Even through all of this stuff, it is completely necessary to laugh and be light-hearted with your everyday experiences- even cancer. Quite frankly, I feel like I could be a poster child for cancer. Meaning I could pretty much answer most questions about it, wheather emotional, scientific, philosophical, whatever makes your boat float. Not that I'm perfect or even close to it, but I have learned a lot over the years and finally want to share and connect with people about it. It is amazing how much helping and learning about others can teach yourself a thing or two. I say that because I would not be where and who I am today if I hadn't listened to the people around me- older people, younger people, and kinds of people. Because although, cancer has taught me priceless things about life itself, there are still "normal" people experiences that I could learn from, and that wiser people can help me with. I try to be a well-rounded person who's every waking minute doesn't concern cancer. No, it is not easy, but I still try to have love, and relationships, travel, and educate myself somehow.
Ah... the area of love and relationships is a great yet pretty twisted area in general, but especially when you have cancer. "Oh.. I'm a Leo that loves long walks on the beach...and...OH by the way, I have a life threatning illness that consumes my everyday life. Wanna get some dinner?" It's not exactly the greatest pick up line. This definitely complicates things, but let me tell you from experience, it's not impossible. It's more like you have a built in "weeder outer"- meaning it weeds out the bad guys pretty quick(or girls). Someone who loves you is not going to care if your bald with a central line sticking out of your chest- even during intimacy- they are just happy to be there:) And it's ok to give yourself time to find YOURSELF beautiful first- that is what is most important. It took me some time to get used to being bald, but I knew it was temporary. As treatmeant went on with radiation to my head- unfortunately I found out I was permanantly going to be bald where I was radiated- which was a HUGE area of scalp. That, I admitt was a much harder pill to swallow. But I found myself a very sexy wig- that did not look like a wig- because that was my biggest fear, was getting a fake looking wig that when people saw you they go " well thats definitely a wig!". It did wonders for my confidence- the wig that is- especially when random people commented on how beautiful I looked and had no idea it was a wig. The bottom line is, if you believe you are beautiful, that will exude and show to others. Whatever the insecurity, it does not matter, you ARE beautiful. And its ok if you need a reminder every now and again.
I've gone through many different stages and phases with cancer, and with life itself. It took me a while to learn that even the bad phases like anger and grief are ok and oh so normal. You can be a happy positive person, but not every waking moment of everyday. You can only except some of the bad a little at a time and cherish and move forward with the good.
Some of the ways I keep persevering has a lot to do with a great support system. My mom, for instance is always there for me, and slept every night in the hospital that i did. Which is a lot of nights... She always tells me to find a little happiness in everyday, to hold us over until we get to those really big happy moments. It's essential to just simply find peace in everyday life. And those reminders help me emmensly, especially when I just got my 4th "Its your last day of Radiation Congradulations Certificate." Really? A radiation tech told me I could make a wallpaper out of all my certificates. Anyways, it's times like that, that you need to laugh it off, and sometimes just having my mom remind me to do just that, can be very inspiring.
Regardless of where your inspiration and strength comes from, take the resources you can. A good friend once told me that it is ok to break down because the people who love you will be there to catch you. Now don't get me wrong, there are people who just say that they want to help you and to give them a call whenever you need, but really they're just saying it to make their own conscious feel better. When it comes to those people who do not follow through just "pick it and flick it!" And when I say "pick it and filck it" I mean like a booger- they don't deserve much more attention than that. But for the people who ARE there for you- cherish them always- they can be pretty few and far between.
Being 20 yrs ,and having as much tragety and racing to grow up as I've had, you learn that friends are where you find them. I have friends that are my age, and friends in their 50s. Sometimes I find I have much more in common with seniors on medicare and SSI than struggling 20 year old college students. And thats ok. In fact, honestly I feel more comfortable surrounding myself with a group of older more knowledgeble people than a typical group of people my age. Which is probably why I only have one friend my age and in college. She is my best friend and has been there for me from the beginning. This is probably one of the reasons we relate so well. Mina has seen me go through it all. She is the one friend who I can go to and say "Can we go now, I have to take my meds by 9:00pm" Most 20 year olds can not comprehend that statement. So take it from me, have fun when you can with whoever you can, no matter age, gender,or nationality. You may find that those who look very different from you on the outside are really quite the same on the inside.
Cancer is a funny thing, it can be the worst thing that ever happens to you, but also one of the most awakening things. It has completely helped to shape and mold who I am today. I see how beautiful and fragile life is ,and try to soak in every moment I can. Alright, maybe not the puking , bone throbbing, back breaking moments. And definitely not the moment where the nurse first comes in the room with a complete biohazard suit on and you realize its to administer the chemo into one of the arteries that goes straight to your heart! Seriously, can they make you feel anymore horrible about putting biohazard waste into your body! But other than that, drink up those happy moments where you laugh at a joke, or cuddle with your kitty or doggy. Enjoy a fresh beer at the end of your day with your family. When I say a fresh beer, I really mean a six pack of course. I look forward to writting a lot more about my experiences with cancer- for this first blog barely hits the tip of the ice burg..
When I say cancer is a whole new way of life, I am neither exaggerating nor embellishing. It is like having two full-time jobs. The first job during the day with appointments, radiation, and chemotherapy- and if you are lucky you will make to your second job later at home- that doesn't always happend. However, once you do make it to your second job at home, you are left to cope with your emotions. You think to yourself "What does this mean?", "What will I do with my life?" "How long are these treatments or how long do I have left to live?" It is sooo hard. But I made a decision for myself and said "This will not beat me." Well... it might beat me UP, but it won't break my spirit. Once I made that decision, I wanted to be positive, funny, and take this as the biggest pain in the ass learning experience of my life.
I was first diagnosed when I was just 14 years old. It is an aggresive childhood bone cancer called Ewing's Sarcoma. I know, who the hell ever heard of that? It was my freshman year of high school, as if I didn't have enough problems already. It was kind of brutal being not only a developping, hormonal teenager, but a bald, sick one at that. I missed a lot of school, but the staff seemed to be very accomadating. However, I had friends in my neighborhood where I lived that were not so understanding. A lot of them actually thought I was lying when I told them about my cancer. Ok... yeah I'm lying about some rare bone cancer called Ewing's sarcoma...I mean come on, who does that? Anyways, it's a heartbreaking experience discovering that you did not have the friends you thought, but a necessary one to be able to recognize it in the future, and have a better support team around you.
Now that I am 20, I can see that my "friends" had no idea how to cope. When you are young, you think you are invincible, so for them to except my situation is to except their own mortality. Although all those "friends" were 2-3yrs older than me at the time, my maturity was greater- even before cancer. I did NOT think I was invincible, ironic huh? Now a days, I'm really glad that experience with those people happend, because I really dodged a bullet- almost all of those "friends" got knocked-up or are on drugs. Whew! Thank God for cancer:)
I've had many experiences through cancer over the last 6 1/2yrs that have made me a better individual, and I'm able to understand people with all trageties better too. But believe me, there are times you think "Now what am I supposed to learn from this one!!?" Especially when you are like me with multiple re-occurances, and metastasis ,and have had multiple different protocols/treatment plans AND STILL have cancer. I've had somewhere between 8and 10 different tumors that have all been treated in some way. After the first time I got cancer, I was hopeful, even after the second relapse followed by a stem cell transplant- I was hopeful. It was only when I was almost 2yrs cancer free and in my second semester of college when it came back for the third time in my skull, did my hope waiver. That was the worst day EVER because not only do your chances of survival dwindle when it comes back after transplant, but so does your zest for life. I may never be able to finish college because of this cancer and make something out of myself- or at least that was my thought at the time. Your life can colapse in an instant, but it takes so much time to build it back up. By this point, I had built myself up multiple times already- could I really do this bullshit for a third time?
When most people get diagnosed with cancer they have choices; chemo and surgery or chemo and radiation. They get to pick between a port and a central line. Ok... so maybe all of those choices suck, but I have had everything on that list, including a stem cell transplant and trying out test studies. I have had three or four central lines and one port over the years( a port is under the skin access, while a central line hangs out of the body as access point for chemo) I've had three different reconstructive surgeries; two on my left humerus when the cancer first arrived -I say arrived like it popped in to say"hello" or something.... but the third was on my skull. Yes, my skull. It is considered brain surgery and they took out a huge chunck of the affected part of my skull. I know, I almost crapped my pants when I found out I had to do this. But don't worry they replaced it (part of my skull) with cement- bone cement that is. How comforting... And of course, I've had more chemo and radiation than the entire oncology wing of Children's and Froedert Hospital put together. Ok... maybe thats a little exaggeration, but it is what I feel like. It got to the point that I was jealous of OTHER cancer patients who didn't have to do everthing I did or had shorter treatments, but most of all I was jealous of survivors. Let's just say that when you are jealous of other cancer patients, its time to re-evalute yourself. In all seriousness, of course I love to hear survivor stories and am ecstatic for them because I know how I would feel if I could be cancer free. It would be indescribable...
Even through all of this stuff, it is completely necessary to laugh and be light-hearted with your everyday experiences- even cancer. Quite frankly, I feel like I could be a poster child for cancer. Meaning I could pretty much answer most questions about it, wheather emotional, scientific, philosophical, whatever makes your boat float. Not that I'm perfect or even close to it, but I have learned a lot over the years and finally want to share and connect with people about it. It is amazing how much helping and learning about others can teach yourself a thing or two. I say that because I would not be where and who I am today if I hadn't listened to the people around me- older people, younger people, and kinds of people. Because although, cancer has taught me priceless things about life itself, there are still "normal" people experiences that I could learn from, and that wiser people can help me with. I try to be a well-rounded person who's every waking minute doesn't concern cancer. No, it is not easy, but I still try to have love, and relationships, travel, and educate myself somehow.
Ah... the area of love and relationships is a great yet pretty twisted area in general, but especially when you have cancer. "Oh.. I'm a Leo that loves long walks on the beach...and...OH by the way, I have a life threatning illness that consumes my everyday life. Wanna get some dinner?" It's not exactly the greatest pick up line. This definitely complicates things, but let me tell you from experience, it's not impossible. It's more like you have a built in "weeder outer"- meaning it weeds out the bad guys pretty quick(or girls). Someone who loves you is not going to care if your bald with a central line sticking out of your chest- even during intimacy- they are just happy to be there:) And it's ok to give yourself time to find YOURSELF beautiful first- that is what is most important. It took me some time to get used to being bald, but I knew it was temporary. As treatmeant went on with radiation to my head- unfortunately I found out I was permanantly going to be bald where I was radiated- which was a HUGE area of scalp. That, I admitt was a much harder pill to swallow. But I found myself a very sexy wig- that did not look like a wig- because that was my biggest fear, was getting a fake looking wig that when people saw you they go " well thats definitely a wig!". It did wonders for my confidence- the wig that is- especially when random people commented on how beautiful I looked and had no idea it was a wig. The bottom line is, if you believe you are beautiful, that will exude and show to others. Whatever the insecurity, it does not matter, you ARE beautiful. And its ok if you need a reminder every now and again.
I've gone through many different stages and phases with cancer, and with life itself. It took me a while to learn that even the bad phases like anger and grief are ok and oh so normal. You can be a happy positive person, but not every waking moment of everyday. You can only except some of the bad a little at a time and cherish and move forward with the good.
Some of the ways I keep persevering has a lot to do with a great support system. My mom, for instance is always there for me, and slept every night in the hospital that i did. Which is a lot of nights... She always tells me to find a little happiness in everyday, to hold us over until we get to those really big happy moments. It's essential to just simply find peace in everyday life. And those reminders help me emmensly, especially when I just got my 4th "Its your last day of Radiation Congradulations Certificate." Really? A radiation tech told me I could make a wallpaper out of all my certificates. Anyways, it's times like that, that you need to laugh it off, and sometimes just having my mom remind me to do just that, can be very inspiring.
Regardless of where your inspiration and strength comes from, take the resources you can. A good friend once told me that it is ok to break down because the people who love you will be there to catch you. Now don't get me wrong, there are people who just say that they want to help you and to give them a call whenever you need, but really they're just saying it to make their own conscious feel better. When it comes to those people who do not follow through just "pick it and flick it!" And when I say "pick it and filck it" I mean like a booger- they don't deserve much more attention than that. But for the people who ARE there for you- cherish them always- they can be pretty few and far between.
Being 20 yrs ,and having as much tragety and racing to grow up as I've had, you learn that friends are where you find them. I have friends that are my age, and friends in their 50s. Sometimes I find I have much more in common with seniors on medicare and SSI than struggling 20 year old college students. And thats ok. In fact, honestly I feel more comfortable surrounding myself with a group of older more knowledgeble people than a typical group of people my age. Which is probably why I only have one friend my age and in college. She is my best friend and has been there for me from the beginning. This is probably one of the reasons we relate so well. Mina has seen me go through it all. She is the one friend who I can go to and say "Can we go now, I have to take my meds by 9:00pm" Most 20 year olds can not comprehend that statement. So take it from me, have fun when you can with whoever you can, no matter age, gender,or nationality. You may find that those who look very different from you on the outside are really quite the same on the inside.
Cancer is a funny thing, it can be the worst thing that ever happens to you, but also one of the most awakening things. It has completely helped to shape and mold who I am today. I see how beautiful and fragile life is ,and try to soak in every moment I can. Alright, maybe not the puking , bone throbbing, back breaking moments. And definitely not the moment where the nurse first comes in the room with a complete biohazard suit on and you realize its to administer the chemo into one of the arteries that goes straight to your heart! Seriously, can they make you feel anymore horrible about putting biohazard waste into your body! But other than that, drink up those happy moments where you laugh at a joke, or cuddle with your kitty or doggy. Enjoy a fresh beer at the end of your day with your family. When I say a fresh beer, I really mean a six pack of course. I look forward to writting a lot more about my experiences with cancer- for this first blog barely hits the tip of the ice burg..
Subscribe to:
Posts (Atom)